IBD Q&A with Classmates: Nutrition

I will be posting several question and answers from the IBD patient panel in a series of upcoming posts. If you have not read that post (or are new to the blog) I suggest scroll down and read the post “Explaining IBD to a Jury of our Peers”. This will give you some context for these Q&As that I am going to post. There are areas where my two fellow IBD presenters and I had similar experiences and others where we differed. I will not be presumptuous and answer for them however in areas where I remember our experiences to be similar I will note them.

As an aside, I am sorry I haven’t posted much recently. I have been feeling absolutely exhausted and devoting my limited energy to working with my hospitals Wound Care team in redesigning the patient education materials for those who undergo ostomy construction. Its just a matter of resource allocation but I hope to knock out some posts you all may find interesting soon.

What nutritional advice had you been given from your gastrointestinal doctors?

The one food all three of us had significant trouble digesting was leafy greens (salad). I cannot eat a salad without at least 1 days worth of pain to show for it. Overall, my fellow IBD-ers (both with ulcerative colitis) and I have received virtually no nutritional advice from GI doctors, or otherwise for that matter. While they are both more recently diagnosed than I, the fact that I have seen 4 different GI doctors and not one has had any true nutritional advice is…interesting. The ONLY bit of nutritional advice I received was when I was first diagnosed and the doctor told my mother and I the “foods that you and most people consider healthy are going to cause you problems because they are more difficult to digest.” Simple but relatively spot on actually. As I said I cannot tolerate leafy greens but other traditionally ‘healthy’ foods like citrus fruits, raw vegetables, oats and whole grains all make me pay.

Beginning this past summer (2014) and continuing up until my ileostomy construction (12/11/14) I had unintentionally been losing weight. I asked my GI doctor if he knew of any nutritionists with experience in working with patients with IBD to help me maintain my weight and possibly increase my energy, he did not. I turned to a family member, a surgeon, who put me in contact with the nutritionist from their hospital. This woman was a God send. I worked with her over several occasions to discuss my blood work, my current diet, foods I cannot tolerate (of which there are many), calculate my basal metabolic rate (how much energy you lose just in day to day activity) and ultimately she came up with several ways for me to increase my caloric intake and suggested a particular multi-vitamin to meet nutritional deficiencies. These nutritional deficiencies were very real and not some obscure molecule that could only be replaced by purchasing a propriety supplement. Lets get real here. This nutritionist has extensive experience working with patients with IBD and it showed, she knows her stuff. None of my GI doctors have ever done anything like this, let alone suggested a good nutritionist.

So why do I think none of us had been given real nutritional advice from doctors? I don’t really know but I’ll give you my opinion. I think that the nutritional landscape is complicated, time consuming and a difficult to interpret field riddled with charlatans trying to trick you out of your money. Remember that cure all proprietary supplement I was just mentioning? I think that a firm background in nutrition is not generally in most doctors tool boxes unless they seriously educate themselves. I just haven’t seen many doctors fluent in nutritional advice. There is so much garbage propagated by people with vested financial interests telling us we cannot live without this diet or that supplement but the bottom line IS THAT I KNOW OF NO DIET THAT HAS BEEN PROVEN TO DECREASE INFLAMMATION. My best advice is to identify your problem foods and to avoid them. If you feel that in doing so your palate is too limited, ask your GI doc if they can refer you to a credible nutritionist. If not, then start doing research for qualified nutritionists in your area with experience in working with IBD.

What has been your experience with nutritional advice from doctors? Please share because I am curious about this. 

2 thoughts on “IBD Q&A with Classmates: Nutrition

  1. My son has Crohn’s. He is fourteen and was diagnosed at age three. What a struggle it has been. We to0 battle nutrition. His nutritionist is constantly telling me what I need to do or make him do. I can tell you this you can’t make a kid do what you want when it comes to putting food in their body. He has a peg tube and we run formula through it, but a times it makes him sick. He’s fourteen and the size of a ten year old, so it can be a struggle in middle school. He handles his self well, plays sports and rides a dirt bike. At our last visit they told us he needed 2000 calories a day. That is a lot. They suggested meals to be a 300, snacks at 100 and two feedings a day. This is a struggle. We continue to do what we can. I have not found a diet nor to I believe there is one to help. I’ve tried everything. The doctors had him on complete bowel rest for 30 days once. That is the only thing that healed his colon. He is on Remicaid every 5 weeks. He is doing well. He could not go without treatment. His disease runs from his esophagus to his bottom. I tried to follow some tips from a book “Eating right for a Bad Gut” by James Scala. But again, until he is grown enough to understand that you can’t eat spicy chips when you’re in flare up and takes over his care as he becomes an adult you can’t force diet. I just do what this Mom can do. He’s a great kid with a great attitude. I’m not sure I would be that way with what he goes through. He is resilient! Good luck to you.

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    • Christy thank you for commenting and sharing the difficult story about your son’s struggle with nutrition. I was older then your son when I was diagnosed but I do understand the difference in being told what to eat vs. what you actually eat. It took me time to come to grips with the fact that yes these people do have my best interests at heart they’re not just trying to bother me. This is a very specific regimen the nutritionists want, have they given you actual plans for ways to stretch out meals and snacks? I know there are tasteless powders out there that can be added to foods to bump up calories+protein, although you probably know more about this then I do. I will have to check that book out I have never heard about it. I am glad to hear that Remicade seems to be working and your son does sound like a great resilient kid with the right attitude. Hearing that he is playing sports and riding dirt bikes put a smile on my face (I’m actually a bit jealous of the dirt bikes, sounds fun!)
      If there is anything I could write a post about that would be of interest to you please let me know. I wish you and your son the best

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